Monday, December 31, 2012

to friends and family of people with dementia

You probably wouldn't be visiting this site if you weren't in some way touched by someone with dementia.  

Perhaps it is your parent who has this illness, maybe it's a friend.  Or instead it might be a sibling, a neighbor, a spouse.  Perhaps the person  you care about is related to or acting as a caregiver for the one with dementia.  

You wonder how you can be helpful.  And at the same time you are frightened by the spectre of a mind's parting ways with reality, with memory, with the ability to function through daily activities.  Maybe you have some ideas about what a person with dementia looks like--possibly from a visit to a nursing home, a hospital, perhaps from a movie or a book.  

If you are being really introspective and honest, the idea of dementia scares you silly.

But here's the thing.  It's an incredibly lonely, frustrating and sad experience we are having--the one with dementia and the spouse/caregiver as well.  The more pronounced the dementia gets, the more lonely, frustrating and sad it becomes.

I imagine you are saying to yourself that you don't know what to say, or what to do.  If, therefore, you say nothing, or do nothing, you are amplifying our loneliness, our sadness.  We do not expect you to have some cosmic thing to tell us about our situation.  We know full well there is no such thing to say.  We do not imagine that there is anything earth-shattering that you might do to 'fix' things.  (Seasoned caregivers have long ago given up the notion of the 'fix'.  There is no 'fix' to this illness.)  

Mostly we are just trying to get through another day.

If you want to help but don't know what to say, or what to do, just show up somehow.  Come by and keep one of us (or both of us) company.  Offer some respite for the caregiver, by keeping the other company for a bit.  Tell us some jokes.  Talk about old times.  Bring brownies,  or soup to share for lunch together.  Something from your garden.  Bring a photo from "once upon a time when", and reminisce.  Listen to stories, even if they are repeats.

Dementia isn't catching, and it is not particularly scary to witness.  Mostly, it just requires a slower, simpler pace.  (That is, if you are not counting the loss, but you don't need to talk to us about our loss.)  We want diversion.  We want connection to those with whom we have shared love and good times in our better days.  

Try to avoid filling the time with tales of your last trip, cultural adventure, romantic date, new house or couple's project.  We are happy for your freedom and your vivid connection to life.  We had great plans for our time together at this stage of life, and we grieve silently every day for those dashed plans. Comparison of fortunes is hard to avoid--particularly  for the caregiver, whose once open-to-anything life is likely to be reduced to the mundane activities of looking after a person with significant limitations.  

Try not to tell the caregiver that you don't see that anything is "that wrong" with X.   I know you mean well, but to us it feels like you don't believe us when we say we find things difficult.  It feels as if you might be suggesting that your experience trumps ours, and you imagine we are somehow exaggerating.  You may see an unexpectedly well-functioning person in your brief encounter.  Heaven knows she/he is working overtime to rise to the occasion of your visit.  What you won't see is how much it takes out of him/her when you leave--how much sleep is needed to recover from the effort.  But come anyway.  It is worth the effort expended to be connected for a time to people we love and miss.

If you tell the caregiver to let you know if there is anything you can do to help, do not be surprised if she/he never asks.  It is hard for us to ask for help--it's one of the top five challenges of the caregiver, really.  Put yourself  in our shoes.  You probably would have difficulty asking, too.  Instead, take action.  Call up and say you want to come over, or want to take X out for ice cream, or lunch.  Bring over a movie to watch together (not a complicated one).  Tell us you are going to the store and you wonder if there is any odd thing you can pick up for us for tonight.  Better still,  tell the caregiver you are going to ____ in a week and wonder if she/he can arrange to get some coverage so you can go together.  Often it is the caregiver who is starving for normal experiences.  Dementia narrows one's experiences drastically, a fact that is particularly hard for the caregiver. 

Finally, it is fine if you ask, "how is X doing?" and talk about how sad it is that his/her life has become so limited.  Please, however, be mindful that this illness limits both people in the couple, provides deep sadness and loss to the caregiver/spouse as well.   It means so much to have this acknowledged every once in awhile.  It makes us caregivers feel visible.  Human.  Understood.

Don't ever imagine you have nothing to give.

Connection.  Presence.  Showing up.  Laughter.  Diversion.  Friendship.  If you have been close to either one of us, this is what our time together 
consisted of before dementia.  See, you do know how to do this.  By heart.



  1. You have been on my mind, Mike. And if we lived closer, I would show up on your doorstep. I would bring chicken soup and tea. And chocolate covered brownies. But I live so very far away.
    I went away recently and fretted the entire time about how my husband was faring. He is still ok on his own, but not for long periods of time. And when he didn't answer the phone, I almost cut my trip short. But I am able to get away at this point, and I am concerned for you because you cannot. Like I said, I wish I lived closer to everyone I loved. I could be a better friend.

    1. Kate, dear--the last thing we should do to ourselves is scold ourselves for not being even yet more available to others. I feel your presence, and I know you are only a couple of keystrokes away. You are already a good friend. The best kind. See the poem I sent along to Cheryl below. Wondering if it speaks to you as it speaks to me. xoxo

  2. You know that there are tears streaming down my face. Even now, It has been over a year since Kenny's death. I am trying to figure this out. Still alone. Still finding it hard to reach out.
    I think of you often.

    1. Dear Cheryl--

      May this be the hardest thing we all do in our lives. It is hard enough. I came across this poem last night. It feels like my lodestar just now. I think of you, too, very often. Connect, any time. xoxo

      Love After Love

      The time will come
when, with elation 

      you will greet yourself arriving 
at your own door, in your own mirror
and each will smile at the other's welcome,


and say, sit here. Eat. 

      You will love again the stranger who was your self.

      Give wine. Give bread. Give back your heart 

      to itself, to the stranger who has loved you 

      all your life, whom you ignored 

      for another, who knows you by heart.
Take down the love letters from the bookshelf,


the photographs, the desperate notes, 

      peel your own image from the mirror. 

      Sit. Feast on your life.

      Derek Walcott

  3. I am not sure how I came to find your 'place' out there in our universe,(divine direction) but it touched me deeply. My mother has battled with dementia for years. I can tell you exactly the year that our world started to turn upside down. It was 1995. She is continuing to walk this path, and so am I, the only child. She has lived in an assisted living that accepts those with this illness. I moved her there in 2005. Somehow, as you describe each detail, I felt every word, every emotion. Even though it is my mother and not my husband, I feel your pain and frustration. May god bless you and your husband. May God give you the strength to get through each day with the Grace and strength that only he can give. You are not alone.


    1. Thank you, Yaya, for your heartfelt reply. And thanks for reminding me that I am (and none of us is) alone. I did not respond right away because we had a crisis here--the kind only dementia can create--and we've been adjusting to "a new level of normal" ever since. Some day soon I'll write about it here. I don't need to say how hard that was--it is always hard--but there is a bright side, as well. Good, solid people just keep appearing. Help is offered on all sides. As a result of the crisis, I have increased my husband's time at his Respite daycare. And I am feeling the effects of a little more time to accomplish all that needs to be done to keep us stable--and I have some time to nurture myself, as well. I am glad you found this place. Do keep coming back. I'm by your side, as well. And we all need each other. ;o)

  4. Oh you are so wise I have been a caregiver along with my sisters for the past six years my Mom has dementia and Alzheimer's .This month we had to move her to a retirement home where she will be safe.This was extremely emotional for we caregivers.I know there should be no quilt but there is. I just came back from seeing her she was happy,safe and called this new room HER PLaCE that made me smile. I may not be the caregiver anymore but I always going to be there and she knows that. A WONDERFUL POST thank you so much. My thoughts are with you and your family. B

    1. Hi, B. Thanks for visiting, and for leaving your comment. I was away for a bit when you wrote, and since then things have been quite rocky--I am sure you know how the smallest illness can upset the functioning of a person with dementia. Some time and some antibiotics are making things more normal--normal for us, anyway. I am hoping your mom is doing well in "Her place". Her just saying that is a good start, isn't it? And I hope you and your sisters are getting some rest and some nurturing after your long haul with your mom. Six years is a long time. Come visit anytime. I've established "comment review" on this blog because of buckets of spam--but be reassured I'll post all your replies as soon as I see them. ;o)